HealingWell
Search Close Search
☰

Just some questions

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/28/2009 11:20 AM (GMT -7)
Hi everyone...I was diagnosed with mild Crohn's this last May, but my doctor didn't really explain it very well to me (however, he may have been able to, but I moved to Chicago for college shortly after my diagnosis). I've been waiting since August to get into a new doctor, but she didn't have any appointments until mid-November, so I'm still waiting.

Anyway, I have some questions. After I was diagnosed, I didn't have any pain until August...then I had a horrible flare up that included intense pain for a week straight (I didn't go to the hospital, although I probably should have). That flare up occurred after my doc took me down from 9mg entocort a day to 3mg...so I called him, and he put me back up to 9mg, and for awhile I was feeling somewhat better. Not long after that, though, I started to have pain again. Is it normal to have mild-moderate pain for at least a few hours every day?
Also, recently, I've been getting bruises all over my lower abdomen...you think this has to do with the steroid?
I'm also taking 4g pentasa a day.
Is my disease getting worse? My doctor told me that he thought it would be easy to get me into remission, but it doesn't seem to be successful so far and I'm only in moderately less pain than I was before I was diagnosed.
Posted 10/28/2009 6:20 PM (GMT -7)
I am no doctor, but it does sound like your case could be worsening. For me personally, I know that I am in danger when I flare despite being on 9mg of Entocort (this has happened to me in the past.) It sounds like you are in between doctors, so it might be a good time to shop around for a doctor who would prescribe Low Dose Naltrexone (LDN.) Compared to Entocort and especially Prednisone, LDN is thought to be very safe for long-term use. It has been around at least since the early 90s, but only started being used from Crohn's recently in trials. I believe it can be had for very cheap also (about $10 per month) but don't quote me on any of this. If you really need something heavy-duty, ask about remicade or humira -- short of surgery, these are regarded as the "big guns" for treating Crohn's disease. They are both dangerous IMHO.
Posted 10/29/2009 5:55 PM (GMT -7)
imissicecream, welcome to the forum.  It does sound to me like you may be getting worse or flaring right now, but do you think stress could be causing the flare to get worse (on top of not having access to a doctor and different meds)?  It sounds like you just moved and started back to school...when I was in college, my Crohn's was flaring from the stress of trying to get good grades on top of working full-time, getting married, etc.  You sound like you have a lot going on and stress does definitely play a role in this.  Having pain for a few hours a day sounds like a flare to me (or atleast not having the Crohn's under control). 

I tried both Entocort and Pentasa (16 pills a day, if I remember correctly) years ago and neither did anything for me.  You may just need to try something different, either from your old doctor calling it in to the pharmacy in the meantime, or once you see the new doc.  Most docs have an order or pattern they follow in trying meds, starting with the ones that are older (more data on them), cheaper (or more likely to be approved by insurance) and safer (again, this can come down to more data on them) and then moving on to the newer, more expensive stuff if the first options don't work.  Like Carnival said, the biologics are normally saved until other options have been tried and didn't work.  But, many of us on here are on biologics and have been for a very long time without any side effects (other than maybe an injection site reaction).  I personally have more side effects to pills than I do to injections, so to me, biologics are not any more dangerous to my body than any of the other meds.  It all depends on how your body responds/reacts to the drugs.  So, only you and your doctor can decide when it's time to try something else and what you should try next.  It often takes a lot of trial and error to find the right medication or combination of medications, the right dosage, etc.  Sometimes it takes trying other GIs also, so maybe your new doc will be able to help you more than your old one did.  Good luck!  This forum is great for getting information and advice.     

Posted 10/29/2009 6:12 PM (GMT -7)
Thank you so much, both of you. If I remember correctly, my doctor said the next step if the entocort and pentasa didn't work is 6-MP. My dad is a pharmacist and he really doesn't want me to take the more heavy duty drugs because he's worried about the side-effects and getting them at such a young age (I'm 17).
I know I'm really stressed out, but it seems almost inevitable. I don't know how to not be stressed out with going to college full time and dealing with my disease (not to mention that my family can barely afford my drugs and I feel guilty)...it's just so new to me....you just never think that you'll be the one to get sick, and then it happens.

Any suggestions for de-stressing?
Posted 10/29/2009 7:26 PM (GMT -7)
I am not familiar with the abdominal bruising. I hope you will work at seeing a doctor sooner rather than later. You don't want things to develop to the point of needing a surgery. Try to notice what foods you are eating. After so many years of this disease I have just found out that tofu really kicks my butt.
Relaxation can be done in many ways. Meditation is one. Consider taking a lighter course load also. Perhaps it would be OK to get slightly lower grades and put just a little less work into your studies?

As for drug costs. Notice the Blue dye reference in my signature below. Ask you Dad if you could safely try this.
I believe that there is a lot of progress on our disease and with you being so young, the future is bright for you. Hang in there.
Posted 10/29/2009 8:18 PM (GMT -7)
I would guess that the bruising is from the steroids as they surpress the immune system ... but definitely see your doctor!! If you are worried about side effects of your current medications or 6MP, I would suggest giving the Specific Carbohydrate Diet (SCD) a try. Many people have achieved remission on the SCD alone. As for destressing, I would recommend exercise (if possible) or, like FunGuy said, meditation if you need something with a bit less impact. For extreme cases of stress: the medication Prozac was very helpful for me in destressing -- it really agreed with me -- and there are plenty of anti-anxiety meds that you could try as well.
Posted 10/29/2009 9:24 PM (GMT -7)
The bruising should be seen by your doc. It sounds like your Crohn's is quite active, despite the meds...with more effective meds and/or diet, the pain should go away. It's not easy to know what will help, because each patient is different.

My daughter has been pain-free on Entocort and a modified SCD diet for years, but is now using LDN to try to taper off Entocort without flaring. I respect 6MP, a powerful med, but we, too, are worried about the side effects and the immunosuppression. 

In case you decide to try out the SCD diet for a couple of weeks, the introductory version of the diet, for the first few days, is here: http://www.breakingtheviciouscycle.info/beginners_guide/the_intro_diet2.htm  To really understand the diet, you would need to read the book, "Breaking the Vicious Cycle." It's a tough diet to follow, but I guess, if it works, it sure beats hours of pain;) The author of the book warns that you shouldn't try it unless you really understand and are ready to follow it with fanatic adherence.  

Posted 10/30/2009 6:46 AM (GMT -7)
Hi Imissicecream and welcome to Healingwell. Many folks on this forum have had great success of getting into remission and staying in remission with 6mp. I believe one of our members Zanne has been on it for about 10 years. We take the 6mp at much lower doses than the other conditions do. I say give it a chance it could help you immensly. Good luck!
Posted 10/30/2009 1:30 PM (GMT -7)
Yes, I have been on it since my late 20's. I am almost 45 now. I have had to do some prednisone at high doses and have not been able to get off entirely for long stretches of time, but that seems to be the way Crohn's is in my family. My mother had Crohn's and several other family members. My mother had to use very high doses of prednisone for many years and could never get off or get to a low dose. I have been able to get to about 5mg and stay there for years now, thanks to the 6MP and Xifaxan. I have not had any side effects to speak of with the 6MP at 50mg dose. At higher doses, I have had some liver tests come back high. That is why you will want to have blood work done on a regular basis if you do go that route. If your liver is not processing the 6MP (or Imuran, close relative) properly, you can have trouble, so your doctor should monitor your blood work regularly and adjust your dosage up or down accordingly.

As far as Crohn's medication goes, 6MP is still on the milder spectrum. Some doctors start with the small guns and work their way up, while others start with the big guns and hit it hard. It really is a matter of style and what they are comfortable with. Ultimately though the choice is yours which way to go. The main thing is to stop inflammation before it forms scar tissue because once scar tissue forms, it can never be healed and then you will have narrowing which can lead to blockages. Not a good thing.

Please feel free to ask all the questions you want and never feel like anything is silly or too icky. We have all been there before.
Posted 10/30/2009 9:51 PM (GMT -7)
Hi Missicecream :) LOVE the windy city - so jealous lol!!! Please dont get worried about the bigtime drugs, yes the side-effects can suck but I'm definitely seeing improvement and am thankful my doc and insurance has been able to rush these good drugs to my Crohns after suffering so long. Also changing the diet to diary and gluten free helps tremendously with pain - may take up to a few days tho depending on you. Hope you have some relief and answers soon hun~
Posted 11/3/2009 4:16 PM (GMT -7)
Awww, you guys are all so nice.
Well, I had an appointment with my new GI yesterday and she did put me on azathioprine. The possible side effects are a little scary to me.
Anyone on here been allergic to it with the pancreatitis side effect?
I'm really nervous about it. She's starting me off on 50mg but then taking me up to 150. Hopefully this works.
Oh, and for the bruising on my stomach, she said that I'm hypersensitive to entocort and it's causing bruise-like striations along my stomach. Also, I had some type of weird rash that was actually caused by my Crohn's too.

Doesn't seem like my Crohn's was as mild as my other doctor told me. Sigh.
Posted 11/3/2009 5:59 PM (GMT -7)
I know, the meds are all scary! I struggle with that every day. My husband is on remicade, and I worry constantly about what if he gets cancer, what if he gets lupus, etc . . . I constantly have to catch myself and bring myself back to the present. As my husband says I ruin a significant part of my present by worrying about the future . . . and he's totally right! But honestly without the meds, my husband would have gone through major surgery last year, and the meds have given us 1.5 years now of recovery and a decent life. So, while the meds are not without their scary factor, when they work, and doctors keep on top of the regular checkups, you can live life again. I hope that's soon in your future.

It sounds like you are happy with your doc in Chicago . . . hopefully she will keep on top of your blood work and catch any anomalies before they become issues. Remember that the medicine must include every since side effect they have seen . . . even tylenol and asprin can have some horrible side effects! So, just because it is in the medicine insert, does not mean that it will happen to you. So, keep your fingers crossed and focus on each day as it comes.

In terms of de-stressing, I can only go by my experiences. I get very stressed about my husband's illness, and all the terrible things we may have to face in the future. Thinking too far ahead and scaring myself with all these terrible possibilities gets me into a well of depression and anxiety, so I am trying my best to not think too far ahead, and to stay in the present. I am trying to ask myself the question, "Is it happening now", whenever I get all wound up about what ifs.

I've been trying to do some mindfulness meditation to try to focus on the present, and on the good things in life, rather than all the bad possibilities, and the anxiety with the what ifs. Sometimes though, honestly it does get the better of me. So I took myself to a psychiatrist, and I now have a script for xanax, for when the anxiety becomes too much for me to bear. Sometimes we do need to rely on medications to help us cope with both our bodies and our minds - nothing to feel bad about.

In terms of managing the symptoms of this disease, I think a log helps - where you write down what you ate, your output, pain scale, etc. And that way you see whether you're improving . . . since nothing in this disease is quick . . . it takes weeks to recover from a flare, and it's hard to tell somedays if you are getting better (and this in itself can bring anxiety), and having a log can help you track progress, and also identify foods that don't agree with you.

(((Hugs)))

I hope you get to feeling fine really soon.

PV
Posted 11/4/2009 12:43 AM (GMT -7)
I developed pancreatitis from the azathioprine (imuran). It was working well to control my crohn's until that happened. If you need it to control the disease then try not to worry too much about the side effects but do be aware of the syptoms of a problem so you can call the doctor should something suspicious happen. My GI was very disappointed that my pancreas blew out since the drug was working for me. Hang tuff.
✚ New Topic ✚ Reply